Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@Supergirl1958 your concerns aren’t silly and if you want to get things checked I’d go ahead. Although as others have said, if you are enjoying your time as parents, and having fun that is really the best therapy ever! If language is delayed, then being in tune, being patient, not ‘talking over’ and letting your child take the lead is great for helping speech.

@Supergirl1958 I always think if my DS is safe, healthy, and happy then that is a great outcome. He's so clever and has all this potential, but the demand avoidance and the everything else makes things so hard for him. He still finds some days hard, even in a lower demand environment with staff who understand. I found it really hard when he was diagnosed, although things made a lot more sense after that (why usual behaviour strategies didn't work etc.) I had to let go of all my expectations and help him to build the type of life he wants, but I mean we all.do that for our kids don't we, it's just his level of independence we're not sure about yet. But he's chatty and funny and loving, just living life by his own rules in his own way!
Hi @SusiePevensie 👋
Oh no @openupmyeagereyes any idea what triggered the meltdown? Hugs to him and you, its so hard to know how to help them.
Hi to anyone I've missed!

@Supergirl1958 your first nursery sounds like our horrific experience of mainstream!
We are also all human, doing our best. Ds' school uses Zones of Regulation so I model that too! E.g. I can feel I'm getting in yellow zone DS (I'm getting irritated) so I'm going to do my strategy of going to another room for a few minutes to get back to green zone.

@Supergirl1958 neither DS nor I can walk past his old school two years on. They had no idea how to manage him and wrote him off aged 5. It's shocking I think, and it's more widespread than I realised. Essentially disability discrimination.

Open sports day did go ahead and only rained a little at the end. It was clearly a lot of effort for DS. When he was doing the running/obstacle races his whole year was chanting his name. He was about 1/3 speed of everyone else, probably didn't help that he stopped in the middle to wave to me but he had a big smile on his face. However, he got v irate when parents were lining up for a race as he wanted me to take part - I am no runner and I had DD with me.

Does anyone have any books/social stories recommendations about parents setting rules/keeping child safe? Yesterday after school (always a bad time here) DS asked if he could go on normal (as opposed to Kids) YouTube. I only let him when I am able to sit with him and keep an eye on him. As I was in the middle of making tea I said not now, maybe after tea. He said that he wanted to punch me so hard that I would die and that after he killed me that he would get another Mum who was kinder. Later I tried to explain to him that my rules are to keep him safe and all because I love him but he wasn't having any of it.

I am not enjoying this week. The hitting and threats of violence have really ramped up

Later I tried to explain to him that my rules are to keep him safe and all because I love him but he wasn't having any of it.

dimples it’s probably not because he doesn’t understand, it’s just that your answer (no, you can’t watch it now) is not what he wants to hear and he’s emotionally immature so this is his reaction. My ds sometimes says he wants a new mum/family when he’s not getting his own way. I don’t think there’s a story that will help do more than you already are but maybe some other posters know of some.

So glad sports day went well, it sounds like everyone is so supportive of him

Moomin he wanted to use a device they have and was evidently told no (he has never used this particular thing before). Possibly he was already wound up a bit at this point. He was tired, it escalated. I think there’s just too much ‘no’ bandied about without thinking in order to try and impose control. I think they don’t stop in the moment to ask how important is this right now? Even if it wasn’t possible then they could have made a plan for him to use it later which may have been enough.

I keep meaning to catch up - and will after I word vomit about how shockingly shit things are at the moment.

We’ve still got NO school place for September. Following the process but we just don’t have time for this. No one seems to care about DS or the impact on us as a family. Right now we don’t know if we need to give up the house, take out a loan to cover my costs from leaving work as they’ll want their money back fairly instantly, if we need to say we can no longer care for DN… it’s impossible to plan anything. To be honest I’ve not been sleeping, spent most days and nights crying and trying to find a solution that doesn’t seem to exist. In a particularly low moment last week I was very clear with all agencies involved that I just can’t do this anymore, and if there’s no school place for DS by the summer holidays I felt they’d benefit more from my life insurance money than having me around (I think I’m half joking, but it’s starting to seem a logical solution). No acknowledgment. I appreciate it probably came across as emotionally manipulative but that wasn’t my intention. DH is doing as much as he can, and equally as terrified as I am. September was always the ‘finishing line’, the time things would get better, but now they’re set to get to the point affording our home and food may be totally unviable (it seems accessing our lifetime ISA’s isn’t an option).

DS cries going to and for hours after leaving school most days. I want to pull him out, but then equally that’s the only respite I get, so feel shitty and selfish and I’m sure I’m damaging him beyond repair. We have one final school coming out to assess him next week, so I’m trying to stay positive. It’s just so fucking hard. Social services are also ignoring me to add another layer of fun.

(Sorry, I know mumsnet will likely flag this post. I really don’t intend on ending my life, I love my family too much, but it’s how I’m feeling at the moment).

Jaberwockky I’m so sorry that things are so difficult and that you’ve been put in this position. Just know that you matter and that your family would not be better off without you

Have you written to your MP? Depending on who it is they sometimes throw themselves into these sorts of issues. Have you contacted your LA’s head of children’s services?

Jabberwockky sorry that things are so tough. You must be exhausted from fighting on all fronts.

Not wishing to add to your jobs but does your DN have an Independent Reviewing Officer? If so, I would contact them, if not then make a written complaint to the Head of Children's Services. You could also complain to them re your DS's lack of school placement. I downloaded a template from the IPSEA website which meant it was very quick to write.

I wish I could say I am shocked by how badly you have been let down but unfortunately it doesn't seem that the problems you are facing are uncommon - but you are dealing with so many at once. Have you got anyone other than DH to talk to about all this? I found the National Autism Society's Education helpline really supportive - I can't remember if your DS has a diagnosis or not, mine doesn't yet but they were still very helpful. Would your DH take over the fight with the LA for a while to give you some respite?

@openupmyeagereyes yes saying the word no without explanation or making a compromise or plan is triggering for my DS too. Almost the weekend!
@Jaberwockky it's awful how badly the system lets down children. I would also recommend Ipsea and complain lots! To everyone! Does he have an ehcp? You can call an emergency review and then appeal school placement. Being 'full' is not enough in law to refuse a place. We had to go to tribunal but it was the best thing we ever did for DS. Very stressful though. Remember: your DS and DH love you so very much. Be kind to yourself too.
The goose and carrot pub on the sen talk board has lots of parents with older children who are full of amazing advice.

I’m probably stating the obvious (which I am often prone to do!). I love all the recent neurodiversity-positive posts. Let’s not gloss over how challenging it can sometimes be though, nor what a shock it can be when you first realise that your child is developing differently and that life is not going to turn out quite as you thought it would. It takes time to process this information. Ultimately, none of us would probably be here if it was all easy. So yes, we should support our children to be who they are and all they are capable of being but that doesn’t mean that all behaviours are ok or that this is an easy road.

Agreed @openupmyeagereyes

I once tried to explain to my sister that having a diagnosis is a little bit like grief. Only you're grieving for the child that you thought you would have and all the fantasies that you had when you were pregnant.

My worst one is Christmas. I love it and had visions of nativities and carols etc. But DD doesn't want to know and as stupid as it sounds its hurts a little bit every year.

But if you explain that to some people then you just get some pointless comment like 'autism is a superpower'. And that's without going into daily struggles. I'd love for someone to explain to me how smearing is a superpower!

Gosh it’s so tough sometimes.
@Jaberwockky the impact of services dragging their feet really falls on us as families doesn’t it. It’s just not OK. Massive hugs! Other people have really good advice which I couldn’t better, I hope there is some light at the end of the tunnel soon.
@dimples76 really lots of sympathies also, that sounds incredibly wearing as a parent to be threatened so aggressively. I’m not saying he’s not also a child who is able to learn to be less aggressive, but just saying that for you, you are a human being and just the toll must be huge. It’s so rubbish that you aren’t getting enough support yourself.
I did use some books, trying to think, although they were aimed at younger kids I think. I’ll look them up. It’s just what works for me personally, but I also ‘signal’ to DS when he’s crossed ‘a line’, which I save for aggression whether physical or verbal. I guess with my tone and posture, I’m quite firm ‘Saying you hated me is not OK, It is not nice to be told that. It makes me feel sad. You do not say that.’ If he’s in the middle of a meltdown I wait until he’s well ‘recovered’, but it’s a signal to DS. I don’t say that about any other behavour, I think I do it because DS isn’t as able to judge what is socially OK or not so I have to give him clear direction with a very distinct clear response. If that makes sense.

On the YouTube, did he comply and not do YouTube? Because if so that’s great, despite his response he did do what you requested. I had to do that with DS and in the end I just banned YouTube because he was getting so angry if I said no. I subscribed to Disney + instead! As an alternative, bit of a pricey reaction… 😞

Also if one more person tells me that they would love their kid being non verbal as theirs doesn't shut up and it drives them batty then I will not be held responsible for my actions!

Dotdotdot19 that is an incredibly stupid and insensitive thing to say.

Ds had an ok morning at school as far as I know. He’s still doing great with his 1:1 swimming lessons.

If the weather is ok I think we’ll try a small fun fair tomorrow afternoon. I think we might also go and see Elemental next weekend.

That's great news on the swimming Open

Dotdotdot19 why would anyone think that it is okay to say that?

Pimmsandcucumber thank you and he couldn't get onto YouTube because he needs me to put the password in to access it. If I did not password control it then there's zero chance that he would follow that rule.

I think DS and I are in a bit of a vicious cycle. When he is aggressive towards me then my instincts are to keep my distance but that leads DS to get more anxious. The last couple of days have been better than the start of the week so fingers crossed that continues.

@openupmyeagereyes
All the school said was that the kids have been sanctioned. No empathy shown whatsoever.

Sorry to read about the difficult times people are having - @Jaberwockky no advice really (although MP does sound like a good suggestion) but thinking of you, do you have any support from friends and fam (for you too, not just DS)? @dimples76 aggression so rough , but doesn’t seem so long ago you had a good day for DS bday - hope there’s more good days on the way but the bad ones leave a bigger mark.

@Dotdotdot19 haven’t had quite that comment but have lost count of the number of people complaining their toddlers ‘won’t shut up’ even when knowing Dd is non verbal. Agreed it’s beyond grating and I’ve started snapping back, mostly it’s colleagues so can be a little awkward but whatever…

DD had a successful play date yesterday but the most almighty meltdown when it was time to go. She finally admitted that as her friend's older siblings also had friends over it was just too many people. She's been struggling with school too, but is at least happy she gets DS's year 3 teacher next year. Said teacher is the head of year so I'm hoping someone with more experience will help.

Jules it’s great that she was able to have that insight, it helps to know what to avoid in future.

We had a good trip to the fair yesterday. It was only small but ds went on more than I expected and managed to do the hook-a-duck by himself twice.

He’s been waking at about 4am for the last few weeks.